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yet another update: After playing phone tag with my doctor (who no longer answers emails even though he states it's his preference and insists he should be getting them) I demanded he allow me to taper off of Lyrica: 1) it's not giving me any benefit in pain 2) it's caused me to gain 15 lbs (yes Jeff/Wumpass, that's a documented side effect) 3) I now am the proud owner of sexual/erectile dysfunction (yes Jeff/Wumpass, that's a documented side effect) and can't recall the last time I masturbated to completion. Actually I think if I try really hard I can get erect, but it takes so long to orgasm I give up; plus I have no interest whereas I used to perform daily or at least every other day. Note: my HIV doctor takes sexual issues very seriously saying it means the med simply isn't working, not that it's just some middling side effect and the patient should buck up and suck it in 4) it's causing acid reflux when I sleep though I forgot to mention that to my doctor -- my bad 5) a handful of narcotics with multiple refills were not thrown at me like a bag of breath mints

so... I have to taper off of it on a 7-day schedule, then (I think) my podiatrist prefers seeing what I feel like on nothing, then to perform a third nerve conduction test, then set the next treatment plan for my PN/tarsal tunnel pain. Another option down the road is to see another podiatrist for a second opinion, but thus far my HIV doctor doesn't find it necessary. I think I have some circulation issues coming into play but he fussed around taking a pulse on my foot and didn't agree, though he thinks my PN has really worsened to the point where I have a lot of sensory deficit on the front halves of my feet, top and bottom. As in he can pinch my foot in places and I can't feel it with my eyes closed, or it feels simply like he's touching my foot, etc.

Mind you, five years ago I didn't have PN at all or if I did it was very minimal. So are current meds causing this (I don't think so), is long-term HIV infection causing it, or did 90's era drugs fuck up mitochondria so bad that a patient can't see an effect like this for 15-20 years later?

Anyway, at this point I'm not even depressed about things, I'm basically just very angry. Oh, and bitter -- a bitter, angry Queen -- and since I was already one of those I guess I'm now a SuperTotes Bitter Angry Queen.

My wife sees a neurologist for her PN related to diabetes. They've done nerve conduction tests to see where the nerves stop working/start misfiring. Currently she uses neurontin to manage hers.

Maybe a neurologist is the better doctor for your PN than another podiatrist.

I haven't really paid attention through this thread. I just clicked the link for the second page Miss P. So if you've been this route, I apologize for being unhelpful .

Plus, I think you have every right to be angry when those who are charged with making your life better are not doing their job.

My HIV doctor was pretty adamant that a podiatrist is the right specialist for this. I'm not just having run-of-the-mill PN, I have that but more significantly sciatica and tarsal tunnel syndrome. But my podiatrist is part of a larger practice -- 3 or 4 podiatrists and they have an in-house Physiatrist (Physical medicine and rehabilitation specialist) that performs nerve conduction tests. The first time I had a nerve conduction test in 2011 it was by a neurologist at a hospital.

But I will include it in my conversation with my podiatrist whether or not I should also see a neurologist.

My HIV doctor did mention going to the Rothman Institute of Orthopaedics at Jefferson Univ. Hospital but decided they'd just send me to another podiatrist. I think right now he wants me to stay with who I am seeing at least until I get another nerve conduction test done and if it shows different results. Of course I will keep him up to date via email which he never responds to or reads. (actually I should not diss my HIV doctor because I've been with him a decade and really like him, I just think the clinic has become overwhelmed with newly diagnosed patients because the infection rate here has skyrocketed).

ps: I think Hendall is splitting and I will be utterly devastated this weekend. Pass the klonnies!

Mind you, five years ago I didn't have PN at all or if I did it was very minimal. So are current meds causing this (I don't think so), is long-term HIV infection causing it, or did 90's era drugs fuck up mitochondria so bad that a patient can't see an effect like this for 15-20 years later?

That's odd that the PN would have just began 5 years ago or so. I'm thinking it's the earlier meds or the long-term HIV (although I can't remember hearing about fairly recent PN from other LTS).

I'm sure there will be more "surprises" in the years to come from many of us that have been living with this for decades. Everyone has had different meds, different timing, and different genes so I would suspect different physical crap.

It sucks.

I hope your newly self-applied Royal Crown is temporary and depression doesn't set in.

...You have had so many surgeries on your feet that I'm thinking it is likely that that is a big player here.

That's odd that the PN would have just began 5 years ago or so. I'm thinking it's the earlier meds or the long-term HIV (although I can't remember hearing about fairly recent PN from other LTS).

I'm sure there will be more "surprises" in the years to come from many of us that have been living with this for decades. Everyone has had different meds, different timing, and different genes so I would suspect different physical crap.

It sucks.

I hope your newly self-applied Royal Crown is temporary and depression doesn't set in.

I'm thinking they're all full of shit about it being connected with HIV and it's mostly this tarsal tunnel syndrome -- when I read the description of it it's exactly what I have, huge compression issues on the front half of my feet, both laterally and whatever you call the downward thing -- it's like I have furniture sitting on the front of my feet and then there's also a vice grip tight on the sides.

I'm also reading neurologist and/or physiatrist nerve conduction tests do not always give a complete picture. Some also do ultrasounds and/or MRIs to rule out other things. It's also more prone to "active" people and I'd say this all really began five years ago, maybe more -- it's as if all the city walking and incessant climbing of stairs for 30 years has caused this instead of actually making me a healthier person like it was supposed to.

I need to research this more and draw up a list of things to be queried more extensively with my podiatrist. Previously we were always focusing on recovering from my surgeries -- which were all addressing something "mechanically deficient" in my feet an an entirely different issue. Seriously, all of this makes my head swim thinking about it because there just seem to be too many issues going on in one place simultaneously. I'm sure I could go to ten specialists and none of them would agree on what is going on, that is how I feel right now. I'm just tired of it.

1) sexual function has returned2) I have lost 5 lbs. and don't look as bloated3) I walked 1.5 miles today4) I am now tracking my walking with MapMyWalk app5) I will hurt all over my body in the next few hours6) I boycotted National Margarita Day because a) Cantina Los Caballitos was far too crowded with Passyunk Hipsters because it went up to 56F today and b) I probably should not consume alcohol while my liver numbers are elevated though I am sure I will at some point anyway7) I am downloading more porn, having sushi for dinner and then catching up on my DVR recordings

We need a good grant writer to get us funding, then we can reside anywhere.

Seriously, don't you think if we stayed together we could really help each other? We need a spa-type existence. With the grant funding the majority of it, and the rest of the services adjusted to be affordable to those of us on SSDI.

Edited to correct spelling.

« Last Edit: February 22, 2014, 07:40:29 PM by BT65 »

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

ps: I also was able to masturbate this morning -- thank goodness for tapering off Lyrica and back on Gabapentin.

Are you serious? You can complete while on gabapentin? I'm on 900 of gabapentin 3x a day. I couldn't complete, much less rise to the occasion if I had to. I'm way too young to spend the rest of my days as a medicinal eunuch.

PN just as others. I've wobble like a weeble at the end of the day. Tried Lyrica and pffft, nothing. Gabapentin, excepting the headaches and dead wood, helps some.

Sorry for the hijack. I'm jealous and needed the vent.

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Life is short, Break the rules, Forgive quickly,Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile.

I'm still on it. Dr. preaches patience and give the meds time. I too was on 300's prior to end of January. Dr and neuro wanted my dose increased. I'm not finding any relief, can't see any reason to continue. I appreciate your discomfort. I've always been active, there hasn't been a malady, ache or pain I couldn't exercise away. Now, exercise and activities only exacerbate the pain in my legs. Don't know if I'm stubborn or stupid but I refuse to slow down. Cycle, run, walk the dogs daily. Damm the neurothopathic torpedoes full speed ahead.

Do you know of anyone that's had relief from B12?

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Life is short, Break the rules, Forgive quickly,Kiss slowly, Love truly, Laugh uncontrollably, And never regret anything that made you smile.

I'm still on it. Dr. preaches patience and give the meds time. I too was on 300's prior to end of January. Dr and neuro wanted my dose increased. I'm not finding any relief, can't see any reason to continue. I appreciate your discomfort. I've always been active, there hasn't been a malady, ache or pain I couldn't exercise away. Now, exercise and activities only exacerbate the pain in my legs. Don't know if I'm stubborn or stupid but I refuse to slow down. Cycle, run, walk the dogs daily. Damm the neurothopathic torpedoes full speed ahead.

Do you know of anyone that's had relief from B12?

Have you visited a Pain Control Doctor

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"If we can find the money to kill people, we can find the money to help people ." Tony Benn

Ryan White covers dental but only if you go somewhere that accepts it -- generally these are dental schools of major universities, at least if you live in a large city. If you are on Ryan White for ADAP then you qualify, and should get a list of dental resources that accept it from your case manager.

Actually a good HIV specialist would be one that inquires about a patient's dental needs at least during the first year of diagnosis. It's important to go to the dentist regularly when you have a chronic infectious disease medical condition.

Thx Gurl.I have 3 appts today. @ UCSD, PA, Pharm and starting retention survey thing.If and when I start meds I've no intention of stopping but got a cold call last week from Ucsd mentioning retention os only 30%, don't know if she is referring to San Diego only or nationwide. Wil get clarifacation this am.Take care.

So, some updates -- after being in physical therapy for a month my PT has decided that I have NO strength issues at all, but tons of balance issues that he believes are neurological in nature, and that basically my leg muscles are in a near constant state of contraction -- hence why I crash midday on the sofa. So he wrote up an interim report and faxed it to my HIV doctor -- he was delayed due to be at CROI so after talking to him on Monday he has someone on staff setting me up with a neurologist at U-Penn. I've had tests run on me for this stuff back in 2011 and last May so we'll see what a third set of eyes shows. My PT is only going to do another week of sessions and then have me come back after we know the results of these tests and what if offered to me to resolve it, because as you may or may not know Medicare has an annual cap of ~$1900 for outpatient physical therapy, though in some severe cases this can be waived.

I had more liver tests run but I didn't get an alarming call from my doctor so I guess they were fine, and I forgot to ask about them when I talked to him on Monday so... whatever. And I continue to lose some weight post-Lyrica and sexual function is totes fine now.

Otherwise, I finished my root canal on Thursday and we all posed for an obligatory selfie. I can't believe how long this process is -- the root canal was actually a two day process, so with the first day of picking out the old fillings and gunk, and now doing a "crown build up", then the crown mold and then the actual crown that will be six visits for one tooth. Then I'll still have a cleaning, followed by work on two other teeth one of which will be another crown. I'll be trekking to that damn place the remainder of the year.

Oh, and on top of all of this three weeks ago someone in my support group passed away, and then I haven't mentioned this at all except to some people privately one of my best friends that I've known for over 15 years passed away Monday night/Tuesday morning. Last Friday I made an emergency trip to NYC to see her in the hospital. She had gotten diagnosed with a very rare form of uterine cancer back in September, had two surgeries, then declined to do chemo because she was told it was state 1 (I'm kind of dubious of this) and since her and her partner with major au naturel types decided they could use a $2500 hydraulic juicer and juice their way to a cure. By the time I learned anything about her health it had spread to her lungs and elsewhere and she'd been in an out of the hospital for five weeks. It was not pretty at all, and by the time I got to the hospital she was barely conscious and could not even talk while I was in the room. I only sat with her for five minutes, but fortunately during the previous 10 days I'd spoken with her twice on the phone, mostly in a lucid state, so I knew it was super bad and what was coming. I've still not really processed it all and didn't go to the wake last night because it would have meant another trip to NYC. Life really has a way of sucking.

She had gotten diagnosed with a very rare form of uterine cancer back in September, had two surgeries, then declined to do chemo because she was told it was state 1 (I'm kind of dubious of this) and since her and her partner with major au naturel types decided they could use a $2500 hydraulic juicer and juice their way to a cure.

There seems to be a 'juicer' that will cure almost anything these days! I had somebody recommend a special salad to me a few months back in lieu of chemo treatment.

David, you have been through more these past few months than a body should have to deal with in a year or more. I will say, you are not one to complain (although you have every right to). All I can say is that I sure hope better times are coming for you soon.

Again, I apologize for being so late to comment here. My inward focus of late has kept me somewhat detached and please do not construe that as an effort to be indifferent. Sending you my best and warmest wishes!